An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research.
An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research.
复制标题
对阅读 Deborah Zoe Laufer 的戏剧《知情同意》对参与基因研究的态度和意图的短期影响进行实证评估。
DOI：
10.1080/23294515.2018.1449771
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发表时间：
2018
影响因子：
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通讯作者：
Byington,CarrieL
中科院分区：
文献类型：
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作者：
Rothwell,Erin;Botkin,JeffreyR;Cheek-O'Donnell,Sydney;Wong,Bob;Case,GretchenA;Johnson,Erin;Matheson,Trent;Wilson,Alena;Robinson,NicoleR;Rawlings,Jared;Horejsi,Brooke;Lopez,AnaMaria;Byington,CarrieL
目的：本研究评估了黛博拉·佐伊·劳弗（Deborah Zoe Laufer）的戏剧《知情同意》的短期影响（这部戏剧虚构地讲述了1989年从哈瓦苏派部落收集的糖尿病研究样本的争议）对西部山间地区医学和本科生、教师和公众的信任观念、捐赠生物样本的意愿以及对伤害和隐私的态度。方法：由专业演员在舞台剧朗诵前后进行问卷调查。调查项目包括简短形式的“对医学研究人员的信任”，以及关于群体认同、儿童基因检测伦理和捐献生物标本意愿的单项问题。此外，受访者还可以选择通过电子邮件回答开放式问题。结果：在481名观众中，421人完成了演出前和演出后的调查，166名参与者在演出后大约一周完成了在线开放式问题。在所有参与者中，对医学研究人员的信任度和调查项目“调查人员对儿童进行成人发病疾病测试是否合乎道德”的信任度都显著下降（p< 0.001）。同意改善群体身份保护的人数显著增加（p< .001），捐赠生物标本用于研究的意愿没有差异（p= .777）。定性数据提供了广泛的背景数据来支持这些观点。讨论：这是第一个记录戏剧表演对研究伦理和临床研究参与的态度和行为意图的短期影响的研究之一。未来的研究应继续探讨公众和研究人员对临床研究中的伦理问题和复杂性的戏剧表演的影响。
Objective: This study assessed the short-term impact of the play “Informed Consent” by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the Havasupai Tribe for diabetes research in 1989) on perceptions of trust, willingness to donate biospecimens, and attitudes toward harm and privacy among the medical and undergraduate students, faculty, and the public in the Intermountain West.Methods: Surveys were administered before and after a staged reading of the play by professional actors. Survey items included the short form Trust in Medical Researchers, and single-item questions about group identity, ethics of genetic testing in children, and willingness to donate biospecimens. In addition, respondents were given the option to answer open-ended questions through e-mail.Results: Out of the 481 who attended the play, 421 completed both the pre and post surveys, and 166 participants completed open-ended questions online approximately 1 week after the play. Across all participants, there were significant declines for trust in medical researchers and for the survey item “is it ethical for investigators to test children for adult onset diseases” (p< .001 for both) following the play. There was a significant increase in agreement to improve group identity protections (p< .001) and there were no differences on willingness to donate biospecimens to research (p= .777). Qualitative data provided extensive contextual data supporting these perspectives.Discussion: This is one of the first studies to document short-term impacts of a theatrical performance on both attitudes and behavioral intentions toward research ethics and clinical research participation. Future research should continue to explore the impact of theatrical performances among public and investigators on the ethical issues and complexities in clinical research.